2021!

Hello all and thanks for reading, if you are reading. And continue to read.

Sometimes I feel like I repeat myself, sometimes when I am in a good mood I don’t even want to write. I feel like writing this is my therapy and I do really look forward to writing each time… So, here I am. First blog of 2021 and well, it will be a big year for us and our beautiful blue eyed Beau!

This is the year I am dreading to be fair. My tiny wee newborn baby (total lies, he was 10 pounds, and now he’s 4 and a half, NOT a newborn, but he’s MY BABY!!!) is going to school!!!!! Not until June, so woah back, but still –

THIS. YEARRRRRRR.

WTFFFFF. Last I heard they didn’t take babies at school lol……. It’s super hard to imagine, as there are 3 incredible teachers who care for his diabetes at preschool, who have amazing comms with us, and we really trust them. In fact, as you know, his levels are often (always lol) much better at preschool. So that is going to be….huge. A really massive change. Humungous.

Now that Beau has had diabetes for over 2 years, I dunno, outsiders think we should have it ‘all sorted’ but you guys know that’s not the case. It cannot ever, and will not ever, be sorted. When it IS going well, he just needs to get excited/run and jump too much/grow/get hot/get cold/get scared/ANYTHING – and it’s different again.

We moved last weekend – YAAAYYYYYY!!! Finally!!! And we are now in the small community of Lincoln. Still close enough to Christchurch hospital, should we need to get there reasonably quickly, but far enough to create a (hopefully!!!!!) close community kind of childhood/schooling experience for our boys.

It is SO nice to be in a new home. We are renting while we build our own home, but building won’t start until later this year when title is out for the section.

The day we moved, one of my besties had the boys (all 3 of them – Cooper, Beau and Rocky!!!! Super brave!) She is a very intelligent woman so I knew she would be fab having them (read – Beau!) so a couple of days before I spent an hour with her and Beau (and the rest of our little (getting big!!) people) training her up.

To train her for the finger prick, she gave herself one (just as KW and I did in hospital in December 2018 when we were learning all of this). It was a moment right? I mean, it hurts!!! A needle goes in, to make blood come out!!!!  Well, she did it, all went well and we kept going. She also pricked Beau while I was there and that was all good.

A few minutes later, she said ‘It still hurts!’ I’d forgotten, it’s been a while since I’ve had one (with Beau’s ‘lamborghini’ pricker – the blood donation places ones are TERRRRRIBLE!!!!! and hurt for DAYS leaving a mark!!) But fuck me. It made me realise, Beau gets these on the daily (I’d say at least 8/10 days he would have at least one finger prick) and how he doesn’t even blink an eye. I can tell if I get one accidentally in the middle of his finger pad, that can hurt more, and his ring fingers hurt more too. He will ALWAYS hand you his pointing finger, but it’s important to share the finger pricking love everywhere so the skin/tissue remains easily accessible, and less painful.

Fuck. He is BRAVE.

Beau the Brave.

Anywho, it all went well, and on moving day the kids and pup went there happy as. We are so grateful to have had them taken care of and looked after and she SMASHED looking after Beau. His levels were high, I think it was hot, he was excited and when caring for someone for a short time, it’s often better they are on the higher side than the lower side. (I personally think, as lows can be scary and can provide an immediate reaction if they are quite low and it doesn’t feel great for Beau.)

So we communicated a lot during the day, re corrections on the pump as he was running quite high, with the arrow shooting straight up, and things like that.

THEN… (During one of the messaging exchanges about Beau’s care…)

Beau got his pricker and finger pricked her daughter!!!! ARGGGGHHHHHHH!!!!!!!

Luckily, it must have been a mutual thing, as she was happy (stoked in fact!!) and she got tested and had a perfect BGL! Phew!!! LOL I was fucking mortified let me tell you!!! I thought he’d just gone and like, I dunno, stabbed her with it LOL so luckily, no one was mad. Big relief. I couldn’t bloody believe it lol little punk. But in a way, I guess he was sharing it around with his wee friend. A little bit of his world.

I can’t help but think it must be lonely for him. Not knowing anyone else with diabetes. With a pump. With a CGM inserted into his arm full time. With a medic alert bracelet.

Another one of my bestie’s daughters wanted to wear sellotape, ‘Cos Beau has tape on him!’ BLESS. I love that. I love that someone wanted to be like him. Cos I NEVER want him to not want to wear these things. I know he might. I know there is plenty of time left for that and a fucking million other challenges in regards to this shit fucking disease. But to think that in OUR world, with our friends who are like family, there are kids who want to be like Beau. Wearing tape. Getting finger pricked. Warms my wee heart I tell ya.

We had clinic the day before moving day too. FINALLY back with our fave endocrinologist, after a year of being on a rotation or something that meant we didn’t see him the whole time!!

He is just awesome!!! We knew that Beau’s HbA1c was going to be higher (read = worse) this clinic, as we felt we had been fighting constant highs for the whole 3 (and more this time) months!!!!! 😬😬😬 It had risen, which didn’t surprise us, but for once I didn’t get tears about it, as this Endo very easily made some changes to Beau’s insulin regime meaning, upping his insulin by 3 units per day!! Which is a lot in our wee ‘tiny insulin amount world.’ On average, children (not honeymooning – that is NOT making ANY of their own insulin) should have 1 unit per kg of body weight per day (in a 24 hour period) and Beau just weighed in at 18kg on this day, was only having 12 units per day. So we have upped it to 15, and we are almost 2 weeks in and so far SOOOOOOOO MUCH BETTER!!!!!!! When we run it this well, it does tend to mean more lows, so that’s something we need to watch out for. As too many isn’t good either!

We did miss our favourite nurse who was on holiday, but he had emailed me an amazing article and email just before Christmas, which made tears stream down my face while my heart was thumping, thinking ‘SOMEONE GETS IT. SOMEONE UNDERSTANDS WHAT WE GO THROUGH.’ So grateful.

We are really hopeful that coming up, we can get Beau onto a trial with the company who’s pump he is on. They are trialing the ‘Closed Loop’ system, meaning that the sensor and pump ‘talk to each other’ meaning that if he is dropping low, the pump will automatically stop his basal insulin. And if he is getting high, the pump will automatically give him more insulin. This is the dream for our foreseeable future. We would LOVE that!! Manual bolusing for food would still need to happen, but wow, that would allow so much more freedom!!!

Fingers crossed we can get on it!!!!!

The only negative, which is quite a negative for me, is that we won’t have the readings on our phones. So now, while Beau is sleeping RIGHT now I can see his levels. (8.3 FYI!) and when he is at preschool – I CAN SEE HIS LEVELS. When we are out and he is being looked after, I CAN SEE HIS LEVELS. When I wake him in the middle of the night, I CAN SEE HIS LEVELS.

Not only can I see his levels, I also feel connected to him. I might not know exactly what he is doing, but I know SOMETHING about him.

But, that might have to be a sacrifice that is worth making. We will see.

Anywho, it’s late now and hubby’s away for work so it’s just me on deck. Best get to sleep.

Before I do though, check out those incredible lashes.